End-of-Life Decision-Making in Cancer Patients : Attitudes, ethics and background factors among Finnish physicians and medical students

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End-of-Life Decision-Making in Cancer Patients

Attitudes, ethics and background factors among Finnish physicians and medical students

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Life is short, and Art long; the crisis fleeting; experience perilous, and decision difficult.

Hippocrates

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ABSTRACT

Appropriate and well-timed decision-making is mandatory to change the goal of care from life-prolonging therapies to high-quality end-of-life (EOL) care in order to prevent non-beneficial treatments and relieve suffering. The decisions include, but are not limited to, statements on cardiopulmonary resuscitation, parenteral fluids, and diagnostic tests. This decision-making is a challenging process as physicians have to strike a balance between the wishes of the patient and family, legal and ethical aspects, and the potential benefits, harms and costs of care. Decision-making should be based on similar principles in the same types of clinical situations regardless of the specialty, experience or attitudes of the physician who is responsible for the care of the patient. Therefore, all physicians should have the skills to recognize the need for palliative care and approaching death.

Concurrently with the growing status of palliative care, discussions about the ethical justification of hastened death due to unbearable suffering have been ongoing for many years around the world. Public support for euthanasia and physician- assisted suicide is mounting all over Western Europe. This changing atmosphere may modify the practices and ethics of EOL decision-making.

This study was conducted to examine the decision-making and attitudes of physicians and medical students regarding the EOL care of cancer patients, and whether there have been changes in these issues over the past sixteen years.

A questionnaire including seven hypothetical patient scenarios was sent to 1 182 and 1 327 Finnish physicians in 1999 and 2015, respectively. In addition, the questionnaire was offered to all graduating Finnish medical students (n=639) during their last year of medical school in 2015-2016. For this thesis five of the cancer patient scenarios were included. The first scenario presented an 82-year-old prostate cancer patient with bone metastases and a deteriorating overall condition.

Responders were asked to choose a palliative, active or intensive care approach. The second patient scenario presented a 68-year-old breast cancer patient with bone metastases wishing a voucher for hospice. The responders’ willingness to issue a voucher was evaluated. The third scenario presented a 60-year-old prostate cancer patient with metastases and paraparesis, who asked for doubling his morphine dose which might lead to a hastened death. The responders’ acceptance for increasing the

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morphine dose was investigated. The fourth patient scenario presented a 32-year-old female with an inoperable, late-stage brain cancer having a cardiac arrest. The responders were asked whether they would resuscitate the patient or not. The fifth scenario presented a 62-year-old male patient with a metastatic end-stage lung cancer. The responders’ willingness to withhold or withdraw different treatment options were questioned. The attitudes, values and background factors of the responders were also enquired and taken into account.

In total, 1 763 valid responses were received, giving an overall response rate of 56%. Decision-making was influenced by the year of the survey (1999 vs 2015), by whether the physician had special competency in palliative medicine (cPM) or not and by the clinical experience of the responder. The physicians with cPM chose less aggressive options in EOL care, although the impact of cPM on decision-making varied among treatments. The graduating medical students were more unwilling to withhold and withdraw therapies suggested to be futile in EOL care than were the experienced general practitioners (GPs), but there was no difference between the students and the GPs when choosing a palliative care approach in EOL situations or in the willingness to issue a voucher for hospice. In 2015, the physicians accepted the risk of hastened death with increasing morphine dose more frequently than in 1999. The experienced GPs were more willing to accept the risk of hastened death compared to the medical students, even though the students considered euthanasia and assisted suicide less reprehensible than the GPs. Physicians’ decisions to choose palliative care approaches significantly increased from 1999 to 2015. When making this decision, the physicians answering in 2015 were more influenced by the patient’s benefit and less influenced by the family’s benefit than in 1999. Physicians were also more willing to issue a voucher for hospice in 2015. Physicians’ attitudes and values influencing EOL decision-making have changed over the past sixteen years; for example, euthanasia was considered to be less reprehensible and religion less influential in 2015 than in 1999.

The changing public atmosphere, advances in medicine, growing knowledge of the benefits of palliative care and education in palliative medicine might have significant influence on the essential decision-making in EOL care, although the impact of these aspects has not yet been investigated. Based on the results of this thesis, the attitudes, education and experience of a physician seem to play an important part in their EOL decision-making. To ensure that all patients receive equal and high-quality EOL care, education in EOL decision-making, including ethical and juridical aspects, should be mandatory for all medical students and physicians in specialty training.

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TIIVISTELMÄ

Asianmukainen ja oikea-aikainen päätös muuttaa hoidon tavoite elämää pitkittävistä hoidoista korkealaatuiseen saattohoitoon on tärkeää hyödyttömien hoitojen välttämiseksi ja kärsimyksen lievittämiseksi. Näihin päätöksiin sisältyy esimerkiksi kannanotot elvytyksestä, suonensisäisestä nesteytyksestä ja diagnostisista tutkimuksista. Päätöksenteossa lääkärit joutuvat huomioimaan potilaan ja läheisten toiveet, lainsäädännön ja eettiset näkökulmat sekä arvioimaan hoitojen hyötyjä, haittoja ja kustannuksia. Päätöksenteon pitäisi olla yhdenmukaista samanlaisissa kliinisissä tilanteissa ja palliatiivisen hoidon tarve tulisi tunnistaa riippumatta hoitovastuussa olevan lääkärin erikoisalasta tai kokemuksesta.

Samanaikaisesti palliatiivisen hoidon aseman paranemisen kanssa eutanasian ja avustetun itsemurhan kannatus on nousussa läntisessä Euroopassa. Tämä muuttuva ympäristö saattaa muokata vallitsevia elämän loppuvaiheen päätöksenteon käytänteitä ja etiikkaa.

Tämän tutkimuksen tavoitteena oli tutkia lääkäreiden ja lääketieteen opiskelijoiden elämän loppuvaiheen päätöksentekoa ja suhtautumista syöpäpotilaiden elämän loppuvaiheen hoitoon sekä näissä mahdollisesti tapahtuneita muutoksia edeltävien kuudentoista vuoden aikana.

Seitsemän hypoteettista potilastapausta sisältänyt kysely lähetettiin 1 182 ja 1 327 suomalaiselle lääkärille vuosina 1999 ja 2015 sekä jaettiin valmistuville lääketieteen opiskelijoille (n=639) vuosina 2015-2016. Tähän väitöskirjatutkimukseen sisällytettiin viisi syöpäpotilastapausta. Ensimmäinen potilastapaus oli luustoon levinnyttä eturauhassyöpää sairastava 82-vuotias mies, jonka yleisvointi on nopeasti heikentynyt. Vastaajia pyydettiin valitsemaan joko palliatiivinen hoito, aktiivinen hoito tai tehohoito. Toinen potilastapaus oli luustoon levinnyttä rintasyöpää sairastava 68-vuotias nainen, joka on hoidossa terveyskeskuksen vuodeosastolla ja toivoo pääsyä saattohoitokotiin. Vastaajilta kysyttiin halukkuutta myöntää maksusitoumus hoitokotiin. Kolmas potilastapaus oli 60-vuotias mies, jolla on luustoon levinneen eturauhassyövän aiheuttama alaraajahalvaus. Hän pyytää nostamaan morfiiniannoksensa tasolle, jonka arvellaan jouduttavan potilaan kuolemaa. Vastaajilta kysyttiin, hyväksyisivätkö he morfiiniannoksen noston. Neljäs potilastapaus oli 32-vuotias nainen, jolla on leikkaushoidon ulkopuolella oleva,

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pitkälle edennyt aivokasvain. Hän menee elottomaksi päivystyksessä ja vastaajilta kysyttiin, aloittaisivatko he elvytyksen vai eivätkö. Viides potilastapaus oli 62-vuotias mies, jolla on loppuvaiheen levinnyt keuhkosyöpä. Hänen kohdallaan vastaajia pyydettiin arvioimaan, kuinka todennäköisesti he lopettaisivat tai eivät aloittaisi eri hoitovaihtoehtoja. Lisäksi kysyttiin vastaajien mielipiteitä, arvoja ja taustatietoja.

Kyselyyn saatiin yhteensä 1 763 vastausta ja kokonaisvastausprosentti oli 56.

Päätöksentekoon vaikutti merkittävästi kyselyyn vastaamisen vuosi, lääkärin palliatiivisen lääketieteen erityispätevyys ja vastaajan kliininen kokemus. Lääkärit, joilla oli palliatiivisen lääketieteen erityispätevyys, tekivät vähemmän hoidollisesti aggressiivisia päätöksiä elämän loppuvaiheessa, mutta erityispätevyyden ja erikoisalan vaikutus päätökseen vaihteli hoidosta riippuen. Valmistuvat lääketieteen opiskelijat olivat haluttomampia lopettamaan ja olemaan aloittamatta hyödyttömiksi ajateltuja hoitoja elämän loppuvaiheessa verrattuna kokeneisiin yleislääkäreihin, mutta palliatiivisen hoidon valinnassa tai maksusitoumuksen myöntämisessä saattohoitokotiin ei ollut eroa. Vuonna 2015 lääkärit valitsivat palliatiivisen hoidon useammin kuin aktiivisen tai tehohoidon. Tätä päätöstä tehdessään heihin vaikutti vuonna 2015 enemmän potilaan etu ja vähemmän perheen etu kuin vuonna 1999.

Lääkärit myös myönsivät maksusitoumuksen saattohoitokotiin useammin vuonna 2015 kuin 1999. Vuonna 2015 lääkärit olivat valmiimpia hyväksymään mahdollisen kuoleman jouduttamisen morfiiniannosta nostamalla kuin vuonna 1999. Lisäksi kokeneet yleislääkärit olivat valmiimpia hyväksymään mahdollisen kuoleman jouduttamisen morfiiniannosta nostamalla kuin lääketieteen opiskelijat, vaikka opiskelijat pitivät eutanasiaa ja avustettua itsemurhaa vähemmän tuomittavina kuin nämä kokeneet yleislääkärit. Lääkäreiden mielipiteet ja arvot, jotka vaikuttavat elämän loppuvaiheen päätöksentekoon ovat muuttuneet kuudentoista vuoden aikana. Esimerkiksi eutanasiaa pidettiin vähemmän tuomittavana ja uskontoa vähemmän päätöksiin vaikuttavana vuonna 2015 kuin 1999.

Muuttuvat yleiset mielipiteet, lääketieteen kehitys, kasvava ymmärrys palliatiivisen hoidon hyödyistä ja palliatiivisen lääketieteen koulutus vaikuttanevat elämän loppuvaiheen päätöksentekoon, vaikka aiempi tutkimustieto tästä on ollut vähäistä.

Tämän tutkimuksen perusteella lääkärin kokemus, asenteet ja koulutus näyttävät vaikuttavan merkittävästi elämän loppuvaiheen päätöksentekoon, vaikka tämä vaihtelee merkittävästi riippuen kliinisestä tilanteesta ja eettisistä näkökulmista. Jotta yhdenmukainen ja korkealaatuinen saattohoito voitaisiin taata kaikille potilaille, elämän loppuvaiheen päätöksenteon opetuksen, joka sisältää myös eettiset ja juridiset näkökohdat, pitäisi kuulua pakollisena lääketieteen perusopetukseen sekä lääkärien erikoistumiskoulutukseen.

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Figure 1. The number and proportion (%) of the physicians and the medical students choosing palliative care approach for the patient with prostate cancer and deteriorating overall condition (patient scenario 1). Numbers and proportions are marked inside the bars. cPM: Special competency in Palliative Medicine.

Figure 2. Mean values (scale from 1 to 5) of all the ten answers in the end-stage lung cancer patient scenario (patient scenario 7) according to responder groups. cPM: Special competency in Palliative Medicine, GP: General Practitioner.

Figure 3. Number and proportion (%) of the responders deciding not to resuscitate the patient with an inoperable malignant brain tumour (patient scenario 6), willing to issue a voucher for hospice for the breast cancer patient (patient scenario 4) and willing to increase the morphine dose (patient scenario 5). Numbers and proportions are marked inside the bars. cPM: Special competency in Palliative Medicine.

List of Tables

Table 1. Different definitions for palliative care.

Table 2. Definitions for different aspect of hastened death in this thesis.

Table 3. Characteristics of the responders.

Table 4. Number and proportion (%) of the physicians answering in 2015 and the medical students answering in 2015 and 2016 deciding to withdraw a treatment in the patient scenario representing the patient with an end-stage lung cancer (patient scenario 7).

Table 5. Number and proportion (%) of the physicians answering in 2015 and the medical students answering in 2015 and 2016 deciding to withhold a treatment in the patient scenario representing the patient with an end-stage lung cancer (patient scenario 7).

Table 6. Attitudes of the physicians in 1999 or 2015, the physicians with cPM and the medical students. Attitudes are expressed on a visual analogue scale (VAS) from 0 mm (definitely agree) to 100 mm (definitely disagree).

Table 7. Background factors and life values of the physicians in 1999 or 2015, the physicians with cPM and the medical students.

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ABBREVIATIONS

ACP Advance Care Planning

AD Advance Directive

CI Confidence Interval (95% if not stated otherwise) cPM Special competency in Palliative Medicine

DNACPR Do Not Attempt Cardio-Pulmonary Resuscitation

DNR Do Not Resuscitate

CRP Cardio-Pulmonary Resuscitation

DVD Digital Video Disc

EAPC European Association for Palliative Care EOL End-of-Life

ETENE National Advisory Board on Social Welfare and Health Care Ethics

GI Gastrointestinal

GP General Practitioner

ICU Intensive Care Unit

IAHCP International Association for Hospice and Palliative Care

IQR Inter Quartile Range

LST Life-Sustaining Treatment

OR Odds Ratio

PAS Physician-Assisted Suicide

PM Palliative Medicine

VALVIRA National Supervisory Authority for Welfare and Health

VAS Visual Analogue Scale

WHO World Health Organization

WMA World Medical Association

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ORIGINAL PUBLICATIONS

Publication I Piili RP, Lehto JT, Luukkaala T, Hinkka H, Kellokumpu-Lehtinen PL. Does special education in palliative medicine make a difference in end-of-life decision-making? BMC Palliat Care. 2018 Jul 18;17(1):94.

Publication II Piili RP, Metsänoja R, Hinkka H, Kellokumpu-Lehtinen PL, Lehto JT. Changes in attitudes towards hastened death among Finnish physicians over the past sixteen years. BMC Med Ethics. 2018 May 30;19(1):40.

Publication III Piili RP, Lehto JT, Metsänoja R, Hinkka H, Kellokumpu-Lehtinen PL. Has there been a change in the end-of-life decision-making over the past 16 years? BMJ Support Palliat Care. 2019 Aug 8. pii:

bmjspcare-2019-001802. doi: 10.1136/bmjspcare-2019-001802.

[Epub ahead of print].

Publication IV Alminoja A, Piili R, Hinkka H, Metsänoja R, Hirvonen O, Tyynelä- Korhonen K, Kaleva-Kerola J, Saarto T, Kellokumpu-Lehtinen PL, Lehto JT. Does decision-making in end-of-life care differ between graduating medical students and experienced physicians? In Vivo.

2019 May-Jun;33(3):903-909.

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1 INTRODUCTION

The World Health Organization (WHO) has defined that palliative care aims to improve patients’ and their families’ quality of life when they are facing life- threatening illness¹. Palliative care intends neither to hasten nor postpone death¹. Approximately 20 million people worldwide are annually in need of palliative care at their end-of-life (EOL)². This demand is highest in Europe due to the ageing population and the increase of noncommunicable diseases².

Well-timed palliative care improves patient quality of life and symptom control, reduces invasive procedures and costs, and might even improve survival^3-11. Although the awareness of the benefits of high-quality palliative care is rising, the use of non-beneficial and even futile treatments is common in EOL care¹². In recent years, medical developments have led to increased possibilities to prolong life in patients suffering from very advanced diseases¹³. However, attempts to prolong life at any cost may be futile and done at the expense of quality of life¹⁴. This complexity makes it even more challenging to choose worthwhile therapies for each patient especially in EOL care.

Appropriate decision-making is mandatory in high-quality EOL care to prevent non-beneficial treatments, to relieve suffering and to utilize resources to the most valuable treatment modalities. Decisions include, but are not limited to, statements on cardiopulmonary resuscitation, parenteral fluids, and diagnostic tests. Decision- making in EOL care is a challenging process involving many ethical, legal, medical and psychological aspects^15-22. The background characteristics, specialties, attitudes and values of physicians all play a part in this complex process16-18,23-26. The education and experience of a physician also influences the decision-making in EOL care^27-32. Although newly graduated physicians often feel unprepared for providing EOL care, they face the complexity of the decision-making process just as the senior physicians do^27,28,30. Nevertheless, decision-making should be consistent in the same types of clinical situations in EOL care regardless of the physician who is responsible for the care of the patient.

Most patients wish for their closest loved ones to be involved in the decision- making and, therefore, discussions with family members are essential^33-35. Physicians’

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decision-making is influenced by families’ opinions, although discordance between a patient’s wishes, the caregiver’s preferences and the caregiver’s predictions of the patient’s preferences may exist^18,35-38. Advance directives reinforces patient participation and commonly make decision-making easier17,18,36,37,39. However, concerns have been raised as to whether advance directives genuinely express a patient’s own will, and there is variation on how advance directives are understood and taken into account in clinical practice^5,40,41.

When taking care of dying patients, physicians are forced to make decisions regarding forgoing different therapies. In EOL decision-making, withdrawing and withholding treatments are generally considered ethically and legally equivalent, but medical professionals feel that withdrawing treatment is more difficult and ethically more problematic than withholding it^13,42-46. Studies also show that decisions to withdraw are taken less frequently than decisions to withhold^42-46. In addition, these decisions vary between different therapies or treatments^47,48. For example, intravenous hydration is often continued in EOL care whereas antibiotics are more frequently discontinued^47,48.

Today, shared decision-making and patient-centred care are preferred by most physicians and patients; this might reflect the changing atmosphere due to the rise of individualism, autonomy and human dignity in western countries^49-57. At the same time, concerns have been raised about the excessive autonomy of patients, which can result in costly, ineffective and even futile treatments⁵⁸. The 1948 Universal Declaration of Human Rights made by the United Nations General Assembly sets a basis for patient rights⁵⁹. After this declaration, several countries, including Finland, ratified international conventions in which human and patient rights were prominent52,53,56,57. The right of the patient to be involved in treatment decisions was included in Finnish law in 1992⁶⁰. In the United States the Patient Self- Determination Act was passed by the US congress only two years earlier⁶¹. Respecting the wishes of a patient is also one of the fundamental principles in the ethical guidelines of the Finnish Medical Association⁶². However, the Finnish National Supervisory Authority for Welfare and Health (VALVIRA) has stated that ineffective or futile therapies should not be used even though the patient requests them⁶³.

Discussions about the ethical justification of hastened death due to unbearable suffering have been ongoing for many years around the world. Thus far, assisted dying through euthanasia or physician-assisted suicide (PAS) has been legalized in seven countries (and in five states in the United States of America)⁶⁴. In addition, public support for euthanasia and PAS is mounting across Western Europe, while

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some decline has been observed in the USA and Eastern Europe⁶⁴. Hastening death in end-of-life care is even more complex and ethically ambivalent than euthanasia and physician-assisted suicide. Withdrawing life-sustaining treatments (LSTs), euthanasia and physician-assisted suicide are sometimes mixed up among the public and physicians alike; for example, terminating life-sustaining treatment is sometimes considered to be euthanasia⁶⁵. Further, the term ‘double effect’ has been used when the ethics of hastening death are discussed. It applies to situations in which an act intended to do good turns to a foreseeable danger of harm or risk of death⁶⁶.

There is a gap of knowledge on how the changing public atmosphere, advances in medicine, growing knowledge of the benefits of palliative care and education in palliative medicine influence the essential decision-making in EOL care. In this study, a cross-sectional survey with a questionnaire including hypothetical and ethically complex patient scenarios was used to evaluate the decision-making of physicians and medical students regarding the EOL care of cancer patients and the factors influencing this decision-making.

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2 REVIEW OF THE LITERATURE

2.1 Palliative care and end-of-life care

2.1.1 Definitions of palliative care and end-of-life care

Palliative care and end-of-life care have evolved from the hospice movement started in 1960’s by Dame Cicely Saunders in England^13,67. Terminology around hospice care, terminal care, supportive care, palliative care and end-of-life (EOL) care has changed over the past decades^68,69. Currently, the term palliative care has an established status and it is defined by the World Health Organization (WHO) as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual¹. Although this clear definition from WHO is widely accepted, different definitions with slight variations between the content exist. For example, a review from 2012 and another from 2013 found 16 and 24 different definitions of palliative care, respectively^68,70. The most commonly used definitions are summarized in Table 1. In spite of the well- established status of palliative care, a lack of awareness and misperceptions are common. In a recent study from the USA, only 27% of community-dwelling adults were able to define palliative care, and of those, only 26% mentioned that it provided symptom management to patients; more than 50% had misperceptions, for example, that palliative care is only for the elderly and is applicable only at the end-of-life⁷¹.

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Table 1. Different definitions for palliative care.

As well as the use of the term palliative care, the use of the term EOL care has increased in recent years⁶⁸. However, there is no exact definition of EOL, probably because of the difficulty of prognostication of the illness trajectory⁶⁹. The USA National Institutes of Health suggests, based on evidence, the following components of EOL: (1) the presence of a chronic disease(s) or symptoms or functional impairments that persist, but may also fluctuate; and (2) symptoms or impairments resulting from the underlying irreversible disease requiring formal (paid, professional) or informal (unpaid) care and can lead to death⁶⁹. Older age and frailty may be surrogates for life-threatening illness and comorbidity; however, there is insufficient evidence for understanding these variables as components of EOL.⁶⁹ The European Association for Palliative Care (EAPC) stated in 2009 that EOL care may be used synonymously with palliative care or hospice care if the end of life is

The World Health Organization¹ Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

The European Association for Palliative Care⁷²

Palliative care is the active, total care of the patient whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of social, psychological and spiritual problems is paramount. Palliative care is interdisciplinary in its approach and encompasses the patient, the family and the community in its scope. In a sense, palliative care is to offer the most basic concept of care – that of providing for the needs of the patient wherever he or she is cared for, either at home or in the hospital. Palliative care affirms life and regards dying as a normal process;

it neither hastens nor postpones death. It sets out to preserve the best possible quality of life until death.

The International Association for Hospice and Palliative Care⁷³

Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life.

The American Society of Clinical Oncology⁷⁴

The integration into cancer care of therapies that address the multiple issues that cause suffering for patients and their families and impact their life quality.

The American Academy of Hospice and Palliative Medicine⁷⁵

Palliative care focuses on improving a patient's quality of life by managing pain and other distressing symptoms of a serious illness. Palliative care should be provided along with other medical treatments.

The National Comprehensive Cancer Network⁷⁶

Both a philosophy of care and an organized highly structured system for delivering care to persons with life-threatening or debilitating illness. Palliative care is patient and family centered care that focuses on effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs, and cultures.

The National Supervisory Authority for Welfare and Health (Valvira)⁷⁷

Palliatiivinen eli oireenmukainen hoito on kuolemaan johtavan tai henkeä uhkaavan sairautta sairastavan potilaan ja hänen läheistensä aktiivista kokonaisvaltaista hoitoa, jolla pyritään ehkäisemään ja lievittämään kärsimystä ja vaalimaan elämänlaatua.

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understood as an extended period of one to two years during which the patient/family and health professionals become aware of the life-limiting nature of the illness⁷². In addition, according to EAPC, it also may be understood more specifically as the comprehensive care for dying patients in the last few hours or days of life⁷². In contrast to the long time period set by the EAPC, in a review by Hui et al., one of the key features defining end-of-life was an expected survival time presented in terms of months or less⁷⁸. This wide range of timeframe makes the use of the term EOL challenging in scientific literature; therefore, a more detailed definition is called for.

In Finland, the definition of palliative care, as “palliatiivinen hoito” in Finnish, is adapted from the definition of WHO (Palliatiivisella hoidolla tarkoitetaan parantumattomasti sairaan tai henkeä uhkaavaa sairautta sairastavan potilaan ja hänen läheistensä aktiivista kokonaisvaltaista hoitoa. Palliatiivisen hoidon tarkoituksena on vaalia elämänlaatua ja ehkäistä ja lievittää kärsimystä. Kärsimyksellä tarkoitetaan niin fyysistä, psykososiaalista kuin eksistentiaalista kärsimystä.)^77,79. The term end-of-life care is translated as “saattohoito”^79,80. “Saattohoito” in Finland is defined as part of palliative care occurring close to a patient’s death (last weeks or days)^80,81.

Compared to the terms palliative and EOL care the previously used term terminal care (“terminaalihoito”) is considered to be old fashioned and inapropriate⁷². Nevertheless, it is still occasionally used by physicians together with the term terminally ill, which is described most often as life-limiting disease with irreversible decline and a survival of less than six months⁷⁸.

2.1.2 Practices in palliative care

2.1.2.1 Globally

Symptom control has been an essential and crucial part of medicine since the very beginning of the profession, as it was stated in the Oath of Hippocrates: “I will use treatment to help the sick according to my ability and judgement”. However, the modern history of palliative care started in the UK, where the first hospices were opened over a century ago^13,67. The palliative care and hospice movement rose in the 1960s through the work of Dame Cicely Saunders^13,67. The number of hospices increased around the western world, and hospital palliative care teams began to form in the late 1970s^13,67. Further, the EAPC was established in 1988 in Milan, Italy and

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the International Association for Hospice and Palliative Care (IAHCP) was established in the mid 1990s in the US^13,67. Today, WHO considers palliative care to be a human right, but only 20 countries globally (9%) have achieved the advanced integration of palliative care within the wider health services, which is characterized by the following: the development of a critical mass of palliative care activism in a wide range of locations; comprehensive provision of all types of palliative care by multiple service providers; broad awareness of palliative care on the part of health professionals, local communities and society in general; unrestricted availability of morphine and all other strong pain-relieving medicines; substantial impact of palliative care upon policy, in particular upon public health policy; the development of recognized education centres; academic links forged with universities; and the existence of a national palliative care association². In 2011, 136 of the world’s 234 countries (58%) had one or more hospices or other palliative care services established².

Palliative care should be applicable already in the early course of illness; it is no longer thought to be an option for other treatment modalities, but rather a parallel model of care^1,13,82. There are numerous ways of delivering specialized palliative care including inpatient palliative care units, inpatient hospices and palliative care consultant teams in hospitals, home care, palliative outpatient services, day care and short-term integrated palliative care¹³. The idea is to operate across all of the settings where patients and their families need support¹³. The way of delivering these services depends largely on the country in question, but some principles and values are common such as a holistic and multidisciplinary approach based on a need^13,82. A recent review from 2017 concluded that a wide range of different models of providing palliative care are used, but comparing them is difficult mainly because of under-reporting of the components that are included in the interventions and comparator models⁸³. However, different models appear to show benefits and can even reduce total healthcare costs⁸³. WHO has calculated that approximately 377 adults out of 100 000 will require palliative care at the end-of-life^2,82.

2.1.2.2 Finland

In Finland, the first steps towards palliative care were the publication of guidelines for terminal care by the National Health board in 1982 and the founding of the first hospice in 1988 in Tampere⁸⁴. Today there are four hospices, specialist palliative care units in all five university hospitals and a national guideline for palliative and EOL care (updated in 2018)^80,85. The Ministry of Social Affairs and Health has recently

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published recommendations for providing palliative and EOL care in Finland⁷⁹. In these recommendations, it is stated that palliative care should be equally available to all citizens based on their need⁷⁹. Although specialized palliative care services are needed, the vast majority of dying patients in Finland are cared for by general practitioners (GPs) in wards of the community hospitals, at home or in nursing homes.

In Finland there are two associations that, work to promote palliative medicine and care. The Finnish Association for Palliative Medicine (Suomen palliatiivisen lääketieteen yhdistys) founded in 2003 aims to promote physicians’ knowledge and education of palliative medicine⁸⁶. The Finnish Association for Palliative Care (Suomen Palliatiivisen Hoidon Yhdistys ry) established in 1995 aims to develop the multi-professional care of people with an incurable disease, as well as terminally ill patients⁸⁷.

2.1.3 Ethics in palliative care

The word ethics comes from a Greek word ēthikós meaning "relating to one's character". Ethics is a sub-branch of philosophy that examines rights and wrongs and seeks to understand how human beings should behave⁸⁸. Many of the ethical issues that arise in palliative care are similar to issues that also arise in other areas of health care, such as the four main principles: non-maleficence (do no harm), beneficence (doing good), autonomy (the right of self-determination), justice (e.g.

appropriate use and allocation of health care resources), as well as truth telling and confidentiality, decision-making authority in the professional–patient relationship, the conduct of research and the focus on ethical responsibility when care is provided by a team13,15,88,89. Other ethical issues are more commonly associated with EOL care, such as decision-making for incompetent patients, withholding and withdrawing life sustaining treatments (LSTs), and hastening death^13,88. Respecting life can be considered as one of the fundamental principles of medicine62,81,88,90. This may, however, create an ethical paradigm in EOL care, if interpreted as a synonym for prolonging life as long as possible⁸¹. On the other hand, respecting life can also be seen as a value that reinforces the relief from suffering in palliative care⁸¹. In the Finnish ethical guidelines for physicians, six main ethical principles are highlighted:

respecting life, respecting human dignity, self-determination, caring (including benevolence, beneficence and non-maleficence), justice and benefit⁶². In the Charter of Fundamental Rights of the European Union, human dignity is called out in the

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first article, and in Finland, the National Advisory Board on Social Welfare and Health Care Ethics (ETENE) raised the term human dignity to an important ethical principle especially in EOL situations^54,91,92. The ethics of decision-making and hastening death are further discussed in the following paragraphs: 2.2.5. Ethics of end-of-life decision-making and 2.3.4. Complexities of hastened death.

A major question in palliative care and especially in EOL care, is how to define a good death, dying well or dying with dignity? There are no right, wrong, universal or all-inclusive answers to this question. People differ in their willingness to face the reality of their death and how they wish to deal with different aspects of dying. For example, how one balances pain relief against alertness and how one desires to talk about feelings with friends, family, or caregivers differs between individuals^13,88. It can be concluded that a good death, dying well and dying with dignity are all regarded differently by individuals^13,88. This personal variability requires health care professionals to approach patients and families as individuals in an effort to provide care that is consistent both with the patient’s and family’s values and with their own conscience⁸⁸.

2.1.4 Education in palliative medicine

The growing need for high-quality palliative care due to the world’s ageing population and the increasing number of patients suffering from cancer and other diseases leading to death demands systematic education in palliative medicine (PM)². This education of health care professionals is considered to be highly important by the EAPC⁹³. Therefore, the EAPC has made recommendations for an undergraduate curriculum (40-hours) in different aspects of PM to be utilized at medical schools in Europe⁹³. In addition, palliative medicine has evolved to a medical specialty in some countries, such as in the UK (1987) and the US (2006)⁹⁴.

In Finland, five universities have a faculty of medicine. Tampere University has had a chair in PM since 1999 and University of Helsinki since 2014. Both these universities have also established a curriculum in PM, while the other three universities with a faculty of medicine lack both professorship and a curriculum in PM⁹⁵. In addition to undergraduate education in PM at medical schools, a postgraduate training in PM has been available since 2007 in Finland. This training leads to a certification for a special competency in palliative medicine (cPM) awarded by the Finnish Medical Association⁹⁶. Finnish physicians are allowed to start this postgraduate training after working for at least 2 years as a licensed physician⁹⁶. The

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special training consists of a minimum of 150 hours of theoretical education in different aspects of palliative medicine, 200 patient encounters in palliative care, 2 years of clinical practice, including a working period in a specialized palliative care unit for a minimum of 6 months, and a final written examination⁹⁶.

Throughout the world, medical students and junior physicians have been found to lack confidence and to feel underprepared for having discussions about EOL care and for providing this care to a patient and their family27,30,97-99. Furthermore, their knowledge about assisted dying, do-not-resuscitate (DNR) orders, advance directives (ADs) and many other aspects of PM is still known to be inadequate^100-103. On the other hand, undergraduate curricula in PM increases students’ knowledge on palliative care and their attitudes towards EOL care change after an observational experience in a hospice28,95,104,105. Physicians also report having insufficient knowledge and training in PM^106-109. Postgraduate education of physicians in palliative and EOL care enhances the knowledge and skills needed to perform high- quality EOL care, including appropriate decision-making29,31,32,110-113.

2.2 Decision-making in palliative care

2.2.1 Principles of decision-making in palliative care

Medical decision-making is a fundamental part of practising medicine, as it occurs at each stage of the diagnostic and therapeutic process¹¹⁴. In Goldman’s Cecil Medicine the decision-making process is described as a blend of science and art in which the physician must synthesize a variety of concerns including the patient’s most likely outcome, various management strategies, the patient’s worst possible outcome, and the patient’s preferences among these strategies¹¹⁵. Decision-making should be evidence-based, but much of the medical decision-making relies on good clinical judgement, as relevant evidence is not always available^114,116.

Appropriate decision-making is mandatory in high-quality palliative and EOL care to prevent non-beneficial treatments and relieve suffering. Physicians have to strike a balance between the wishes of the patient and family, consider legal and ethical aspects and evaluate the benefit, harm and cost of the care. Paternalism was the previous method of making medical decisions, where a physician made the decision based on the medical evidence and what he or she thought to be best for a patient^117,118. In an informed (patient-centred) model, the patient makes the decision

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based on the information given by a physician^117,118. Concerns have been raised about the excessive autonomy of patients, which can result in costly, ineffective and even futile treatments⁵⁸. Thus, today, shared decision-making has emerged as the ideal model for complex decision-making19,117,119-121. At a minimum a physician and a patient are involved in the decision-making process, but family members, caregivers and other important persons such as friends can all take part, if it is a patient’s wish¹¹⁹. Before the actual decision-making both the patient and the physician share information and discuss with each other¹¹⁹. Thereafter, the patient (and family members, etc.) and the physician take part in the decision-making process and make informed decisions regarding the medical care together¹¹⁹. However, it is also possible and allowed for the patient to take a more passive role as the shared decision-making is considered to be a continuum rather than a rigid model^19,119,121. Today, this shared decision-making is known to be preferred by most physicians and patients^49,51,122.

Multiple guidelines and frameworks have been established to ease the decision- making process in challenging medical situations117,123-126. The purpose of these guidelines and frameworks is to enhance ethical deliberation in the decision-making and to provide practical and educational tools for health care professionals when they are faced with complex decision-making situations. For example, the guide from the Council of Europe gives a practical step-by-step model for decision-making regarding medical treatment in EOL situations¹²³. In addition to guidelines, different interventions, such as videos, digital video discs (DVDs) and web-based tools, have been created to support shared decision-making, but the evidence of the benefits of these tools is scarce and inconsistent¹²⁷.

In practice, medical EOL decisions frequently precede dying in Europe, and patients and relatives are generally involved in this decision-making¹²⁸. In a study from Switzerland, 77% of EOL decisions were made through a shared decision- making process in 2013¹²⁹. Patient-related factors are known to influence the decisions about withholding or withdrawing LSTs, with age being the most frequently investigated factor^24,130-133. In a review article by Frost et al., age was the most commonly identified factor predicting the intensity of the EOL care after adjusting for other variables in cohort studies²⁴. Among survey studies, age was the second most commonly identified determinant after patient wishes²⁴.

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2.2.2 Advance care planning

When a patient is faced with a life-threatening illness, it is important to be prepared for the possibility of losing his or her capacity to take part in medical decisions.

Advance care planning (ACP) is a way for preparing for situations in which a patient is no longer able to participate in decision-making^134-139. There was no unified formal definition of ACP until 2017, when two multidisciplinary Delphi panels published consensus definitions for ACP^137,140. The first definition, approved by the EAPC, defines ACP as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health care providers and to record and review these preferences if appropriate¹³⁷. The second definition states that ACP is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care¹⁴⁰. The goal of ACP is to ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness¹⁴⁰. Originally, ACP focused on completing written documents such as ADs but has then evolved into an ongoing social process of also preparing for death and dying, involving not only the patient and healthcare professionals, but also family members and loved ones¹³⁹. One of the most important transitions is the movement from a single discussion about goals of care to an evolving process, which requires constant updating136,137,139,140. The ethical grounds for ACP are in patient’s self-determination, respect for an individual, and the exercise for control even when a patient loses his or her capacity138,139,141. In the US, the amount of ACP among community-dwelling individuals aged 50 and older has steadily risen from 36% to 61% between 2002 and 2010¹⁴².

Recent reviews show that ACP can positively impact the quality of EOL care and that complex ACP interventions may be more effective in meeting patient preferences than written documents alone134,135,143-145. According to the studies, ACP decreases the number of hospitalizations, allowing especially older patients to die in nursing homes, increases the number of DNR orders, improves concordance between preferences for care and delivered care, and increases the use of hospice care134,135,143-145. There is some data that ACP could potentially reduce the net costs of care, although this is, in most studies, associated with the reduced demand for hospital care^146,147. Despite the mounting evidence of the benefits of ACP, implementing it in practice can be challenging. The lack of knowledge among healthcare professionals and the public regarding ACP is an obstacle to implement ACP in practice¹⁴⁸. Other barriers against taking up ACP include having a diagnosis

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of a non-malignant disease, having dependent children, being African American, having uncertainty about ACP and its legal status, and poor documentation^149,150. Several tools, including electronic health records, games and videos, have been created to facilitate ACP^151-154. Some of these have a positive impact on the initiation and implementation of ACP to standard, every day practice^151-154. However, a recent systematic review by Myers et al. concludes that instead of tools, an effective ACP conversation at both the population and the individual level requires provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to create an impact at the population level¹⁵³.

On the other hand, the effect and utility of ACP has also been under debate in recent years^155-158. There are studies in which ACP has not improved quality of life or reached other pursued goals^159,160. It has been proposed that meaningful improvements in EOL care will not result from the institutionalization of ACP, but from more significant changes to the design and delivery of care¹⁵⁵. At the same time, the risk of routinization and turning ACP into just another protocol, undermines the importance of an open ethical dialogue where no correct answers exist^156,157.

The Finnish national guideline for palliative and EOL care recommends the following topics to be covered in ACP (“Pitkälle edenneen sairauden hoitosuunnitelma”): 1) Patient (and loved ones) wishes, fears and understanding of the disease trajectory now and in the future; 2) Goals of care; 3) Treatment modalities and needs; 4) Decisions to withhold treatments; and 5) EOL care⁸⁰. A recent article in a national medical journal, Duodecim, introduced the same elements of ACP as mentioned above and highlighted the importance of conducting ACP for all patients suffering from an advance disease¹⁶¹. A Finnish study showed that even modest investments in resources for palliative care can induce an objective change in the allocation of health care resources and improve the ACP for cancer patients at their EOL¹⁶². Visits to a palliative outpatient clinic have been shown to correlate with a higher frequency of DNR orders, better connection to primary care and better documented goals of care¹⁶².

2.2.3 Advance directives

The first proposal for ADs was made by the Euthanasia Society of America in 1967, and Luis Kutner, a human rights lawyer from Chicago who represented the society, described this concept in his article published in 1969¹⁶³. He suggested that the

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individual should indicate in writing ahead of time the extent to which he or she would consent to treatment¹⁶³. Since 1976, when the first living will statute was adopted in California, the number of living will laws has increased rapidly¹⁶³. In many countries, AD statutes require witnesses or a notary to be legally binding^163-165. As in the case of ACP, the ethical basis for ADs rests in a patient’s autonomy^138,164.

The prevalence of ADs varies widely. In the US, the prevalence of ADs seems to have increased from approximately 10% up to 21–55% among the elderly in the last 10 years, while a Finnish study from 2004 showed that only 12% of the home- dwelling elderly had a living will^166-168. In another study from Finland from 2003, only 1.5% of patients suffering from cardiac arrest without resuscitation being initiated had a living will.¹⁶⁹ The place of care also influences the prevalence of ADs.

A recent Australian study demonstrated, that the prevalence of ADs was higher in residential aged care facilities (48%) than in hospitals (16%) or in general practices (3%), reflecting differences in the patient cohorts in these facilities¹⁷⁰.

Although ADs reinforce patient participation in EOL discussions, patients often wish for their physician to initiate the discussion^39,171. ADs are shown to increase the decision to forgo medical interventions, including in complex situations where the patient’s health care proxy disagrees with the statements in the AD^36,37. This is further supported by a very recent review where twenty-one out of the twenty-eight studies reported that individuals with living wills received significantly less medical management of which the authors meant cardio-pulmonary resuscitation, mechanical ventilation, hospitalization or admissions to an intensive care unit (ICU)¹⁷².

Concerns have been raised as to whether ADs express the genuine will of a patient at an exact moment⁴⁰. Although the stability of EOL preferences is demonstrated in a recent study by van Wijmen et al., this was not supported by another recent study by Gallo et al., showing that transitions in preferences do happen highlighting the need for reassessments^173,174. There is also variation in how ADs are implemented in daily practice. In a study made among palliative care physicians in Japan, most of the responders considered ADs to be important, but only one third actually recommended patients to complete their ADs⁵. Health care professionals report positive perceptions of the use of advance care documentation, but it is not clear how ADs are implemented in EOL discussions in daily practice or whether it increases engagement in EOL discussions to have access to previously formulated wishes¹⁷⁵. Physicians are more likely to follow patient ADs, if the decisions are in line with their own clinical views¹⁷⁶.

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In a Finnish study from 2004, a majority of physicians answering a questionnaire had a positive attitude towards (92%), and respect for (86%), living wills, and 72%

reported situations in which such a will would have been helpful¹⁷⁷. In Finland, ADs are considered legally binding upon physicians and other health care professionals based on the Act on the Status and Rights of Patients which states that a competent person has a right to refuse any planned or ongoing treatment upon receiving adequate information or refusing to take this information60,62,81,178,179. All physicians, no matter where they practice medicine, should follow a patient’s wishes expressed in an AD (except for wishes regarding futile therapies)^62,81,180. Thus, ADs ought to be transferred into patient records as clearly as possible^62,81,180. In Finland, it is also possible for a patient to have a legal representative who has a right to make medical decisions on their behalf¹⁸¹.

2.2.4 Withholding and withdrawing treatment

Withholding LST is the deliberate decision not to initiate treatment aimed at prolonging life, whereas withdrawing LST involves removing a medical intervention without which life is not expected to continue due to the patient’s underlying health status^13,182. Withholding or withdrawing LST is therefore considered to lead to a patient death due to the natural progression of their underlying illness, not by hastening death¹³. The similar result of both of these decisions has led to the conclusion that from a Western bioethical perspective, there is no moral or ethical reason to differentiate between withholding and withdrawing LST^13,183-185. However, this perspective has been challenged in several articles in recent decades, reasoning, for example, that withholding is passive and withdrawing is active or that a physician’s duty to care for a patient makes it unethical to withdraw a treatment once started46,184,186-188.

The legality of withholding or withdrawing LST differs between countries. In most western countries, withholding or withdrawing LST is legal; this is in contrast to the developing world where these actions are either of uncertain status or are illegal¹³. In Finland, the physician is responsible for the medical care of the patient, including medical examination, diagnosis and treatment of disease¹⁷⁹. Based on the Act on the Status and Rights of Patients, a competent person has a right to refuse any planned or ongoing treatment upon receiving adequate information or refusing to take this information^60,178. It is stated in the Act on the Status and Rights of Patients and in the main principles of Physician’s Ethics, the ethical guideline for

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Finnish physicians, that a physician must treat a patient in agreement with and in a mutual understanding^60,62. However, futile therapies should not be used (even if a patient or families have requested them), as stated by the Finnish National Supervisory Authority for Welfare and Health and the Act on Health Care Professionals^63,179. As the physician is responsible for the care of a patient, it is legal in Finland to withhold or withdraw life-sustaining treatments, if they are considered futile^63,81,179. This is a medical decision made by the treating physician, but it should be discussed with the patient^63,81,179. In cases where the patient is incompetent, decisions should be discussed with relatives, other loved ones or with a legal representative, if the latter is legally defined^63,81,179. Although it is very important to make sure that decisions concerning withholding treatments are included in the patient record, there is still no uniform way of doing this in Finland due to different electronic health care records and health care keepers across the country. A new electronic national health care data base (Kanta) in Finland is trying to gather information from different sources into one location where important information about patients can be found more easily¹⁸⁹.

Physicians’ knowledge of the law on withholding and withdrawing LST may have significant gaps^22,190,191. False perceptions, such as forgoing LST for patients without decision-making capacity requires evidence that this was the patient’s actual wish or that the withholding or withdrawing of artificial fluids and nutrition from a terminally ill patient is illegal, can impair the delivery of the best possible palliative care for patients at their EOL^22,190,191.

Although it is generally accepted that the withholding and withdrawing of LST are morally and ethically equivalent, physicians decide to withdraw therapy less frequently than to withhold it, probably because they feel that withdrawal is more difficult and ethically problematic than withholding42-45,182,186. The physicians’

decisions regarding LST also vary between different treatment modalities; the most common reasons for withholding or withdrawing treatments in EOL care are a poor prognosis and futility of the treatment in question23,42,47,48,133,192,193. In a Scandinavian study, 57% of intensive care physicians would continue intravenous hydration, but only 5% of them measured blood glucose during EOL care⁴⁸. Another study conducted with Slovenian ICU physicians had similar results, where 76% of responders reported never having terminated intravenous hydration, but antibiotics where withdrawn by most of the responders (86%) in EOL situations⁴⁷. Almost all of these studies were conducted in an ICU setting and with ICU physicians or intensivists48,130,133,192-194. Thus, it is not clear how well these results would translate

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to a much larger palliative care patient population who are cared for outside of ICUs and emergency departments.

It is true that some medical interventions such as resuscitation or mechanical ventilation are clearly intended to prolong life when used in EOL care, whereas intravenous hydration, antibiotics and supplementary oxygen can be considered as symptom management rather than just LSTs. Artificial nutrition or medically assisted hydration have not been shown to improve survival, quality of life or symptoms in EOL care, although the evidence about this is scarce^195-199. However, some studies have raised concerns about the potential harm, such as increased respiratory secretions, related to hydration during EOL care²⁰⁰. The use of antibiotics in EOL care is controversial, but there is some evidence that antibiotics might relieve symptoms without having serious side-effects^201,202. Supplementary oxygen is used in more than 70% of patients in EOL care, although the evidence to support this is lacking^203-209. The benefits of transfusions in palliative care are experienced briefly and remain controversial²¹⁰. The symptomatic relief gained from treatment such as a red blood cell transfusion is often short-lived, or even absent, if given very near death²¹⁰.

2.2.4.1 Do-not-resuscitate orders

As discussed previously, ACP is a broad entity, but DNR or do not attempt cardiopulmonary resuscitation (DNACPR) orders are in many ways an important part of these discussions134,136,211,212. The issue of resuscitation raises fundamental ethical questions about autonomy (a patient’s wishes and choices), beneficence (doing good), non-maleficence (harm avoidance) and justice (allocation of limited resources and appropriate decision-making)²¹³. Thus, the ethical basis for these orders can be seen as what is in the best interest of the patient, as DNR orders presumably allow dying patients to die with dignity^178,214.

Multiple studies have shown that the outcomes of cardiopulmonary resuscitation (CPR) are poor, especially in cancer patients, whose overall survival after CPR for hospital discharge is less than 10%^14,214-217. Despite recent medical advances, CPR survival in the cancer patient population has not changed¹⁴. The survival from CPR declines towards zero as the cancer spreads and the performance status lowers, resulting in the fact that attempting CPR for a cancer patient with widespread incurable cancer and a low performance status is indeed futile²¹⁸. Although the evidence of poor CPR outcomes among cancer patients is consistent, misconceptions about DNR orders still exist among the public and physicians. In a

End-of-Life Decision-Making in Cancer Patients : Attitudes, ethics and background factors among Finnish physicians and medical students